ME/CFS and Fibromyalgia Patients on Drugs For Better Sleep

In Health Rising's Sleep Survey people with ME/CFS and FM rated how effective many sleep drugs and other treatments were for them. We also asked for comments - and got hundreds of them. This resource covers comments made regarding some of those drugs and others.

See the Sleep Survey for reviews of all commonly used sleep drugs (except Zoplicone - which I missed).

The number of times someone simply stated a drug's name and made no other comment is presented like this. Zopliclone (Zimovane) - 3x's

The comments indicated that people with ME/CFS and FM are using a wide variety of drugs to help them sleep.

Sleep Drugs

Zoplicone (Zimovane and Imovane) /Eszopiclone (Lunesta)- a sleep initiator, Zoplicone/ Eszoplicone was not covered in the sleep survey, and was easily the most commonly cited sleep aid.

Zipliclone (Zimovane) - 3x's

Lunesta - 5 x's

My single most effective sleep medication. As it seems it's not approved in US but prescribed commonly in Europe. The standard sleep drug in hospitals here is Zopiclone though; a lot of people are using this.

Zopiclone but ineffective on 3rd night

Zopiclone for a time but I ended up becoming immune to it

Zoplicone, my issue is constant waking and no deep sleep. Just started LDN and am now having many dreams throughout the night but feel like I am barely sleeping while doing so.

Most effective sleep med for me is zopiclone.

On occasion I take Zopiclone, generally if having to share a bed with my partner (we sleep separately because of my sleep patterns and his snoring) which sometimes works to decrease number of awakenings, sometimes not.

Zopiclone is very effective in getting me to sleep. This is my main problem. But GP will only let me take it occasionally.

Zopiclone/imovan

Zoplicone and amitryptiline

Zopiclone - Short-acting hypnotic. Helps me fall asleep (Ambien doesn't), even though my sleep is still poor I'm much worse off without it.

Ambien- 3 x's - If it wasn't for Ambien, I would probably be bed bound on life support or dead right now. I keep trying to wean off of it but no go- and nothing else helps.

I put Zolpidem (Ambien) because it is the closest to Zopiclone which I use. It is the only thing that works for me as it seems to 'quiet down' part of my brain which then enables me to concentrate on 'gentle sleep music' and I fall asleep. Without this medication my brain just keeps going until so exhausted after several days that I basically 'become 'unconscious' (in that no one can wake me) for 3-5 hours - then my brain just goes 'ping' and turns on again until again so exhausted after several days that I sleep a few hours again.

Temazepam - I have been on this drug for years and it is effective in keeping me asleep, otherwise, I would wake up 3 or 4 times a night and often not be able to get back to sleep / which I can no longer have, sadly / 5 x's 30 mg. at bedtime / Presently taking Restoril (temazepam) 30 mg. Initially was taking 15 mg with reasonable results combined with good sleep hygiene. However, Insurer insistence on attempting THIRD work hardening program (exhausted me and exacerbated ALL ME/CFS syptoms) to assist 3rd return to work (didn't happen!) created worse insomnia, and therefore increase in dose of temazepam.

Ativan is moderately helpful with insomnia (for as long as it lasts).

Rozerem (Ramelteon) 8 mg.

Temazepam, Lorezepam, Alprazolam

Antidepressant type drugs

Dothiepin 75-125mg at night (dothiepin is similar to doxepin, and one of the most widely used tricyclic antidepressants outside of USA)

I take Doxepin capsules and not the elixir. The elixir may be more effective, but I haven't tried it due to cost and inconvenience. I'm on 100mg., which I regret having increased to, but I've been on it for a long time and am nervous about reducing. I take it as much for my nighttime RLS pain as for sleep onset-staying asleep.

Savella 12.5 mg. These answers have been influenced by being on Savella for 3 years. Searched for years for help with constant awakenings and not sleeping deeply. I would wake up wide awake like I hadn't slept at all. Also take .5 mg Alprazalom and 20 mg melatonin nightly

Cymbalta ended up having the best impact on my sleep, though it hasn't helped with the pain

I have tried both amitriptyline (rated above) and Surmontil (trimipramine), both of which are sedating tricyclic antidepressants. Both have similar effects in terms of getting to sleep but I sleep 1-1.5 hours longer on Surmontil (which I welcome).

Only Amitryptiline has helped, without it I'm awake almost every hour of the night.

Taking Endep (amytriptyline) has greatly improved my sleep.

Endep, 20mg taken about 4 hours before going to bed.

Take prescription Endep

I take Amitriptyline and Xanax if I only take Amitryptyline I wake after three hrs. I wake after three hrs if I don't take anything. The Xanax stops the adrenalin and it helps to put me back to sleep

I was on Elavil for 15 years. I was given it for insomnia and migraines. I had to titrate the dose up as I developed a tolerance for it. At the end I was on 200 mg a night. Yes, that's night a typo. At that point I had to wean myself off of it as it was no longer effective even with increasing dosages. It also, and check the PDR on this, can give you significant peripheral neuropathy. I have a wicked case of it even more than five years after termination of the drug. It's better but I doubt after this length of time I'll ever really recover.

Xanax, if feeling anxious or overwhelmed with thoughts at bedtime. Half a tablet of lowest dose is enough. Leaves me feeling heavy and weak (no muscle power) during the day though, so I only use it when it's really needed.

Xanax helps me sleep.

taking a Xanax if my mind won't "turn off".

I take Amitriptyline and Xanax if I only take Amitryptyline I wake after three hrs. I wake after three hrs if I don't take anything. The Xanax stops the adrenalin and it helps to put me back to sleep.

Lexapro

Panadol, Lexapro

Lexapro

Mirtazapine

Mirtazapine - 3x's

Mirtazepine 3.75 mg

Also found mirtazapine helpful for sleep.

Taking mirtazapine . This makes me sleep for 8-10 hours so I take it when I have had some bad nights, about once a week. If I didn't have this I would feel 100 times worse than I do.

Others

Low dose of sertraline (Zoloft)

I've been on Agomelatine for sleep for most of the last 5 years and it does help

I have for many years used Mersyndol for my sleep issues but it is no longer effective. Mersyndol contains the following active ingredients: Paracetamol 450 mg, Codeine phosphate 9.75 mg, Doxylamine succinate 5 mg.

Injecting 0.02 mg of adrenalin subcutaneously before going to bed. This has had an immense effect

Oral progesterone an 1-2 hours before bedtime helps calm the nervous system. It significantly calms my nervous system and diminishes pain. Unfortunately it only last about 3-4 hours maximum - but it helps more than anything else. All the other prescription meds that help calm the nervous system end up causing more pain (rebound), more insomnia, and other side effects while long term use. I've tried them all and have ended up worse off if I used them long-term. Short term they have helped somewhat.

hormone replacement therapy for hot flashes.

HRT for hot flashes

Fixing other issues. HRT for peri-menopause and beta blockers to lower heart rate made a HUGE improvement.

HRT

Bioidentical progesterone cream

Serotonin tab 2mg.

Anticonvulsants

Consulting a sleep doctor and having an overnight sleep test at a clinic was a big help in understanding what was going on. Taking gabapentin to counteract leg spasms was a huge help. The DR. said even after I'd fallen asleep leg spasms were probably keeping me from falling more deeply asleep, and the leg spasms during the "falling asleep" period had gotten to be quite severe. It was a relief to have those go away. He's also got me taking doxepin, which helps somewhat. *** Also, I'd been getting up multiple times a night to pee. A year or two ago my GP prescribed oxybutenin for bladder spasms, which took care of that. So it's a case of chipping away at the problem a bit at a time.

Gabapentin helps a bit

Only Lyrica seemed to help, and that is beyond my budget.

Low Dose Naltrexone (LDN)

low dose naltrexone(also helps reduce pain)

low dose naltrexone (4.5 mg qhs) rx'd by Dr Sean Mackey @ Stanford.

Low dose naltrexone to manage pain - very effective.

LDN has had the biggest effect on my sleep quality and length. Prior to hitting 5mls my sleep had been really dreadful for 8 years since getting ME. I'm now on 6mls but I still ahve bad nights and that has such a huge effect on my already difficult symptoms. Recently I had a week without LDN and by the end I was terribly unwell, back to very severe symptoms. It confirmed how much the LDN is helping. It is the only drug to have had that affect.

Began taking Valcyte on a regular basis. Experienced decreases in pain, improvement in cognition. Improvement in functioning in general including sleep. Not well but greatly improved. Also have always taken clonazepam which works well for me. If I wake in the middle of the night I will do stretching exercises so I won't be so tight in the morning. The key was the antiviral which calmed my brain and tamed the pain so I am doing much better.

Clonidine - without Clonidine I am up all night.

Lithium orotate 5mg at night.

Beta blockers

taking Naprosen for spondyloarthritis and bursitis.

Gravol (dramamine)

Medical Marijuana (high-CBD/high-THC dose) actually makes me sleep through the night. Without it, my results are as recorded on this survey. With it, I wake up feeling rested, and my FitBit records FAR less activity during sleep (movement in general). I can sleep a solid 8-9 hours and wake up in the morning before my alarm clock. I generally do not wake up during the night from pain anymore, and I am usually able to fall asleep within 30-45 minutes.